Terry Feest

1. The UK Renal Registry 2013 - From there …to here ….to where? Terry Feest

2. Our intuition doesn't like change From there …to here ….to where? Approaching the changing reality with sensible flexibility is the best strategy for happiness. AL Kennedy

4. There …….1997 • Electronic returns only • Quarterly quality data – Hb, BP, etc • BUT • 9 units • 2 staff sharing my office • Dependent on grants • Largely manual validation • Many sceptics!

6. Nearly here….2007

7. Nearly here….2007 • Full coverage • Comprehensive reports • No longer anonymous • RRT results in the UK improving

10. Nearly here….2007 • Full coverage • Comprehensive reports • No longer anonymous • RRT results in the UK improving • Financially and editorially independent • BUT

11. 2007….. …… • Data collection slow • Reports late • Data quality static • Paediatrics not incorporated • No vascular access data • Little PD information • No infection data • Little new – not developing? ..2009 …..still only nearly here

12. Our intuition doesn't like change Stuck here 2009 1996 Approaching the changing reality with sensible flexibility is the best strategy. AL Kennedy

13. Insanity The definition of insanity is doing the same thing over and over and expecting different results. Benjamin Franklin

14. Picture of paper validations

15. Data handling review 2010 onwards The process within the RR • Automating and speeding • Consistency & Accuracy • Electronic handling • Staff recruited

18. Data validation “automation” We want the data managers to have time to: • Think • Communicate with you • Work with you - both units and suppliers

19. Data handling review 2010 onwards The process within the RR • Automating and speeding • Consistency & Accuracy • Electronic handling • Staff recruited • New communications with units • New communications with suppliers • Routines for some on site validation • Improved data quality

21. Data handling review 2010 onwards The process within the RR • Automating and speeding • Consistency & Accuracy • Staff recruited • New communications with units and suppliers • Improved data quality • Reduced time by at least 6 months • We have caught up to date

22. Here….2013

23. Here….2013 Up to date and… • Interactive portal • HES data project and other linkage • Paediatric incorporation • PD project • Vascular access project • RADAR • Renal patient view support • ATTOM project

24. Our intuition doesn't like change Beginning to spread our wings 2013 1996 Stuck here 2009 Approaching the changing reality with sensible flexibility is the best strategy. AL Kennedy

25. To where?.... • Patient measures • Patient reported outcome measures • Patient reported experience measures • Shared decision making project • Patient activation • Acute Kidney injury – £1.2m • Dialysis • National laboratory surveillance

26. To where?.... • Liaison with commissioners: • Performance measures routed via the Registry • Transplant listing, Adequacy, Peritonitis, MRSA, Access • Improves data and saves you work

27. To where?............. • Flying high • But the core will always be data collection and audit of performance in order to improve patient care • Without success of the core work which you are all involved with the Registry will have no future

28. Data • Registry dependent on the data supplied • i.e. Your work

29. To where?.... • The Renal Data Collaboration • Entirely new concept in collection and validation of data • To make life easier • Patient and doctor benefit • Potentially the most important single development • Needed the personnel

30. Our intuition doesn't like change Beginning to spread our wings 2013 2015? 1996 Stuck here 2009 2014 Approaching the changing reality with sensible flexibility is the best strategy AL Kennedy

31. www.renalreg.com